Thank you for your participation and support of the Share & Care Cockayne Syndrome Network. By participating in the 2009 National Butterfly Walk for Cockayne Syndrome (CS) you have a tremendous impact on improving the lives of individuals with CS and their families.
Click on the “Get Started” button to find out if there is a location near you to register as a walker or volunteer helper and to set up a fundraising page. Online Personal Fundraising Pages are passionate, powerful, and persuasive, and you will raise more money, with less effort. You may also sponsor a friend by entering their name in the space provided on the top right of this page or click on the Donate button to simply make a donation for our worthy cause.
Cockayne Syndrome (CS) is a rare genetic disorder characterized by poor growth, microcephaly, progeria (premature aging), sensitivity to sunlight, moderate to profound developmental and neurological delays, and a shortened lifespan.
Funds received from the 2009 National Butterfly Walk enables The Cockayne Syndrome Network to continue its mission to provide educational programs, exchange of information, and also support research. The Share & Care Cockayne Syndrome Network and our Medical Advisory Board members are proud anounce we have coordinated the first scientific conference focused only on Cockayne Syndrome, which is going to be held September 2009. We will have close to 40 leading researchers in the field of CS from around the world gathering in Boston, Massachusetts to share information that will assist researchers and increase interest in helping CS patients.
Register to walk by September 24th, 2009 to guarantee a t-shirt.
Registration is free and simple.
